On the road to authorship. It brings smiles from Mama. You too?
Sunday, June 16, 2013
SMA ravages the inside and the outside
This is what Spinal Muscular Atrophy (SMA) looks like up close and painfully personal.
The inside ....
Ravages the outside.
Its not just the spine affected but everything caving in the back bulges out the front.
Her swim bottoms are size 18 months.
Do her skeletal thighs and calves not make you weep?
They do me.
Friday, June 14, 2013
Wednesday, June 12, 2013
Meisyn needs an MRI
So the medical mysteries continue. We had a wonderful wedding on June 8th and when we get the pictures from the photographer I will post. Meisyn looked completely divine in her white gown. ("A dress is the word for cute things but a GOWN is an extra, super special dress" according to Meisyn)
But today we are back in the real world. Meisyn has more medical issues that need more figuring out. We have taken a unexpected trip to Primary Children's Medical Center to see her specialist. She had another panic attack and feels stinging at the base of her spine. Its like she is being stung by bees. She will have xrays tomorrow and hopefully they can get us in to the sedated MRI on Friday so we don't have to come back up. Its a four hour drive each way for us. Good thing we have such wonderful friends and family who take us wanderers in. They want to rule out a tethered cord. I think it is likely that her nerves which already can't listen and obey the signals of the brain, are doing their own thing and basically wigging out. Hopefully an MRI can give us some direction as Meisyn has no textbook to follow. We are making a new road as we walk it.
I do have to say that I so appreciate the spring. The flowers, the mountains blanketed in green, and the rustle of the leaves make my heart lighter. I so dreaded the winter. But spring did come. A promise of new life is here. So is Meisyn.
I am posting something I wrote when I was in much more denial. I am learning to enjoy and live each and every minute. Meisyn is teaching me this.
But today we are back in the real world. Meisyn has more medical issues that need more figuring out. We have taken a unexpected trip to Primary Children's Medical Center to see her specialist. She had another panic attack and feels stinging at the base of her spine. Its like she is being stung by bees. She will have xrays tomorrow and hopefully they can get us in to the sedated MRI on Friday so we don't have to come back up. Its a four hour drive each way for us. Good thing we have such wonderful friends and family who take us wanderers in. They want to rule out a tethered cord. I think it is likely that her nerves which already can't listen and obey the signals of the brain, are doing their own thing and basically wigging out. Hopefully an MRI can give us some direction as Meisyn has no textbook to follow. We are making a new road as we walk it.
I do have to say that I so appreciate the spring. The flowers, the mountains blanketed in green, and the rustle of the leaves make my heart lighter. I so dreaded the winter. But spring did come. A promise of new life is here. So is Meisyn.
I am posting something I wrote when I was in much more denial. I am learning to enjoy and live each and every minute. Meisyn is teaching me this.
Sunday, September 23, 2012
Falling....
Typically autumn has been my
favorite time of year. The visual change in the living preparing for winter
slumber, the crispness of the air cooling my cheeks, the coming of early dark,
all give me comfort and make me want to burrow in and create of place of
coziness.
Not this year. As each leaf changes its color, in the garden of serenity I have planted and nurtured through the late frosts of spring and the blazing desert heat, I am filled with panic. I have an overwhelming desire to collect each leaf and blossom that falls and return it to its perch. I am not ready for winter. In place of the joy and feeling of abundance I usually feel this time of year, I feel dread. I am not ready for winter. Even with the knowledge that...spring WILL come...the cycle of life will continue...joy will return. I am not ready for winter.
Why?? Why this overwhelming meloncholy? Perhaps it is a symbol of my tremendous struggle with Meisyn's condition. I am not ready for her body's winter. I am not ready for her earthly slumber, for the coldness of her cheeks, for the darkness of the huge hole that will nearly collapse my heart.
I am not ready for the princess crowns that will be exchanged for angel wings.
Its so much for me to carry.
I thought I had worked through all this conflict as I traveled the grieving
process for Ammon's path. But, I clearly see I am not ready for his quirky,
love filled soul to leave me either. I am not ready for the storms that must
preceed my rainbows. I am not ready for winter.
The other day huge
rain clouds gathered and the thunder roared and shook the house. Meisyn
shrieked out with anxiety. Ammon quickly comforted, "Otay Meisyn. Wainbow
comin'". Where is my faith that the rainbows ARE coming? All I can feel is the
foreboding of the devastating storm.
I follow another mother's blog who travels the same broken road that I am on. I will borrow from a post she shared this week. I am trying to get to this point but I am having such a struggle.
"Why would I want to allow the enemy to steal joy from today through my fears of tomorrow? God will already be there when and IF I arrive! If I carry tomorrow's burden of pain today, will it make the burden lighter tomorrow? Obviously not! But Christ will be there tomorrow to help me carry it! So, for today.... I will choose JOY instead! "
Stefani
Not this year. As each leaf changes its color, in the garden of serenity I have planted and nurtured through the late frosts of spring and the blazing desert heat, I am filled with panic. I have an overwhelming desire to collect each leaf and blossom that falls and return it to its perch. I am not ready for winter. In place of the joy and feeling of abundance I usually feel this time of year, I feel dread. I am not ready for winter. Even with the knowledge that...spring WILL come...the cycle of life will continue...joy will return. I am not ready for winter.
Why?? Why this overwhelming meloncholy? Perhaps it is a symbol of my tremendous struggle with Meisyn's condition. I am not ready for her body's winter. I am not ready for her earthly slumber, for the coldness of her cheeks, for the darkness of the huge hole that will nearly collapse my heart.
I am not ready for the princess crowns that will be exchanged for angel wings.
I follow another mother's blog who travels the same broken road that I am on. I will borrow from a post she shared this week. I am trying to get to this point but I am having such a struggle.
"Why would I want to allow the enemy to steal joy from today through my fears of tomorrow? God will already be there when and IF I arrive! If I carry tomorrow's burden of pain today, will it make the burden lighter tomorrow? Obviously not! But Christ will be there tomorrow to help me carry it! So, for today.... I will choose JOY instead! "
Stefani
Wednesday, June 5, 2013
Ladybugs All Dressed In Red
Ladybug
Ladybugs all dressed in red
Strolling through the flowerbed.
If I were tiny just like you
I'd creep among theflowers too!
Strolling through the flowerbed.
If I were tiny just like you
I'd creep among the
Little Lady Meisyn video
Sunday, June 2, 2013
The Magical and Mystic Monkey (WHOA!!)
Meisyn was commissioned to complete her very first art piece. When I told her about her commission proposal she BEAMED. She exclaimed, "Oh I am very good drawing. I can do a great, great job for her". She wanted to know what the new mama and her waiting son looked like so I showed her this picture.
The mother had one requirement, "My only request for Meisyn is that she designs my art piece. I don't care if it is a house, a princess or a future hamster. There aren't any colors that I dislike and she has free range. As long as it comes from her, I know I will love it. Just please remind her that artist sign and date their work."
The mother had one requirement, "My only request for Meisyn is that she designs my art piece. I don't care if it is a house, a princess or a future hamster. There aren't any colors that I dislike and she has free range. As long as it comes from her, I know I will love it. Just please remind her that artist sign and date their work."
Thus began the interpretations between the mother, Laura, and myself, Stefani
From: stefani@infowest.com
From: stefani@infowest.com
Sent: Tuesday, May 21, 2013 10:34 PM
To: Laura
Subject: Re: Meisyn
I am curious as to why all the Americans in the picture are drinking sodas? Benjamin Maurice would rather play with an octopus. Cracks me up.
I am curious as to why all the Americans in the picture are drinking sodas? Benjamin Maurice would rather play with an octopus. Cracks me up.
Stefani
On 21.05.2013 22:33, Laura wrote:
Ha! I just noticed the monkey climbed the apple tree and came away with a banana. Isn't that life?
From: stefani@infowest.com
Sent: Wednesday, May 22, 2013 12:23 PM
To: Laura
Subject: Re: Meisyn MONKEY MEANING, wow.
I LOVE that symbol. Yes, that is life in a nutshell...or an apple seed. You get what you totally did not expect.
Meisyn shared with me something else about the monkey that both of us missed. Note the monkey is sideways. This is because, "The monkey is falling...oh no! Don't fall monkey! But its okay cause hims (meaning all your family) will catch monkey. Then monkey is safe"
I believe this is the most symbolic meaning of all...
Stefani
On 22.05.2013 19:42, Laura wrote:
That is the best thing I have heard in a long, long time. I feel like I want to sit down with her so she can teach me the meaning of life. Well, maybe at least a new way to look at it. For a moment, I can almost imagine what a beautiful place this world would be if we looked at it through the eyes of Meisyn.
Did I by chance send you the most recent picture I received of Ben in the red sweat suit taken outside?
From: stefani@infowest.com
Sent: Wednesday, May 22, 2013 9:00 PM
To: Laura
Subject: Re: Meisyn MONKEY MEANING, wow. BEN WEARING MONKEY SHIRT?!
Say what????? I am falling off my chair now. I never showed Meisyn this picture of him. She only saw the referral ones of him in the rainbow pants. Oh my soul HE IS WEARING A MONKEY SHIRT AND PANTS!! Makes what she said about the Monkey even more fitting. "but its okay cause hims will catch Monkey. Monkey will be safe." I am in awe.
Stefani
Laura wrote:
I had chills when I noticed that today and I have chill bumps again. Monkey will be safe. Promise
Laura
Laura
I just LOVE this pet....WAHHH! Hamster video
Sand Bucket List #9 PET A HAMSTER or HAVE A HAMSTER FOR A PET have both been met. A hearty THANK YOU to 16 year old Elyse from Minersville who loaned us her hamster for the week. What a cool thing! Elyse, you brought her the biggest smile and I hope that this will bring a smile to you, because it might make you worry.
DISCLAIMER: No hamsters were (intentionally) harmed while filming this video. Just shaken up a bit. So very, very sorry Elyse!!
http://youtu.be/1VxmW7STvWE
Then we had cute Katie give Meisyn her teddy bear hamster Mickey. He is all kinds of fun.
DISCLAIMER: No hamsters were (intentionally) harmed while filming this video. Just shaken up a bit. So very, very sorry Elyse!!
http://youtu.be/1VxmW7STvWE
Then we had cute Katie give Meisyn her teddy bear hamster Mickey. He is all kinds of fun.
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